Success...

I was going to title this post 'big success' or 'huge success' but I want to keep things in perspective. Anyway, this afternoon Siobhan was so excited and came into the kitchen and knelt on the floor. Kneeling has been hard the last few months so this was very exciting! She could kneel down on the floor but couldn't sit back on her heels. Kneeling for family prayer was always a fight because of it. Criss cross applesauce was also problematic.

So when Siobhan came into the kitchen and knelt down on the floor, the first thing I noticed was that she wasn't just kneeling, she was sitting back on her heels!!!!!! Yippee!!!!!!!!!!! I asked her to sit criss cross applesauce and again, not problem! I had her lay down on her back and bent her left knee toward her chest and boom! No issues! This is so exciting!!!!!!! And that's without any of her meloxicam (daily anti-inflammatory) today as well. I'm so happy but best of all, Siobhan is so happy.

I can't imagine what it must be like for her to not have any pain. It must be such a big difference and I'm so happy for her!

I want to be realistic as a lot of kids have their symptoms come back within a few months of the steroid injections. So I'm determined to remain cautiously optimistic. I'm just looking forward to (hopefully) more than just a few months of no pain.

Injections...

Well, our 'Stint in Juvy' took a turn for the slightly more intense today when we took Siobhan in to have her joint injections. First some background and clarification on what was actually being done and why. The basic gist of it all is that the prednisone that Siobhan took this summer didn't do what it needed to do. We were using it as an anti-inflammatory but after six weeks, the inflammation didn't go down enough and Dr. I was not pleased with the result. So she recommended that we just put the steroids right into the joints themselves. Does that clarify it all a little better?

So this morning was the big day. Because Siobhan was going to be under general anesthetic, she had some very specific requirements as far as diet. We were told that if the instructions 'were not followed exactly, the procedure would not happen!' So I got up really early to head her off in the morning. You see, Siobhan has this problem when she gets up and I'm not up yet. She gets into the pantry (or our 72 hours kits-we won't talk about that) and she snacks in the morning. Well, today was not the day for that. She wasn't allowed to have any solid food after midnight last night, and nothing after 7 am. So I got up at about 6:45 to make sure that there was no snitching. It worked because, wouldn't you know, today was the day that she decided to sleep in...until 8am.

We took Siobhan to Primary Children's Hospital at the University of Utah-they are amazing, more on that later-to their Rapid Treatment Unit. Got all checked in went to the 'pre-op' room where the nurse took vital signs and all that good stuff.

*Vital Signs*

Then the best lady came in and explained everything to Siobhan about what was going to happen. She used pictures to show her what the room was going to look like, had a mask to show her how it would feel and let Siobhan pick out the flavor that she wanted to breath in while being given the anesthetic.

Funny story, she had probably 10 flavor vials for Siobhan to smell and pick her favorite. They made a like and dislike pile but the like pile was much bigger than the dislike pile....like she put every vial in the like pile. It was pretty funny. When the anesthesiologist came in Siobhan still hadn't decided. She was leaning toward Cotton Candy then decided on Cherry and the anesthesiologist was happy because he said the cotton candy was too sweet. But in the end, she went with Cotton Candy. They let Me and Carson smell it and OH MY GOSH, it smells just like childhood!

Anyway, Siobhan chose Carson to head back with her while she went 'under'.

About 25 minutes later, Dr. I was back in the room telling us that everything went awesome. She got the needles in just great and she even drained some fluid off of the left knee. She also let us know what we need to do when she got home. That includes keeping her laying down for the first 24 hours (you try keeping Siobhan down for 24 hours....good luck!) and limited activity for another 24 hours. Then about 5 minutes later, a nurse came and brought us back to find a very loopy Siobhan sucking on a straw and drinking grape Fanta. She was hilarious! The first thing she said was 'Mommy, Daddy, I feel dizzy!' and she had a huge goofy grin on her face.


She also got a snack of cheetos which was a big treat because I don't let them in the house (I hate cheetos). Pretty soon, she was loaded into a wheel chair and we were heading to the car (and the torrential downpour).

We were so nurvous about today and I'm glad that it turned out that we really didn't need to be. Between the mention of the words anesthesia, steroids, and injections plus the fear of the unknown and we were, needless to say, a little worried. Siobhan has been resting well and has had minimal pain which has been managed with tylenol. Dr. I also told me that if everything looks alright, we can stop her daily medication and only do her supplements and the weekly injection. How great is that?

And now a word about Primary Children's Medical Center...I know that all children's hospitals are good, they treat children right, so they have to be good and you have to have great people in a setting like that. I just think that PCMC has to be one of the best. We are so lucky and so blessed to have the resources offered there at our disposal. I'm not sure if we would have had the same level of treatment in Denver. Maybe we would have, but I'm learning that Pediatric Rheumatology is a hard department to come by and we are so lucky to have such a beefed up department so close to us. All the nurses at PCMC are friendly and caring and they treat you like you and really your child is the only one who matters. I'm so grateful for that.

It truly is a humbling experience to walk through those doors. Talk about putting you in a vulnerable position with a mixed bag of emotions! At first, you feel grateful that it is available to you and that you only have to be there for a short amount of time, but then you see a parent with a child walking around and you recognize, through subtle clues-exhausted eyes, conspicuous hospital bracelets, jammies, that they have essentially made their home there and you can't help but feel sad for them. I'm so grateful that, theoretically, we will not be in that position as a result of Siobhan's arthritis.

Ear Infections...

No, Siobhan does not have an ear infection. She has been listening to us talk about her joint injections and since she doesn't understand what they are, the closest thing that her brain could come up with is ear infections. Isn't that funny! Anyway, we're going to Primary Children's Hospital in the early AM so we can have her left knee and right ankle injected with steroids. Yay! We're hoping that it's going to be a one time thing. Dr. I is confident that it will be a good thing, but we won't know how often she'll need the injections until she's had this one and we've seen how she's handled it.

Carson gave her a wonderful blessing this evening and we're confident that we have the Lord on our side. Please pray for us and Siobhan and all those involved. I'm going to take the computer with us to the hospital and I hope to update the blog while we're waiting.

Fun Fact Friday...

Out with the old in with the new. That's the theme for today's fun fact. For the longest time, we always knew the most common type of Juvenile Arthritis as Juvenile 'Rheumatoid' Arthritis or JRA. Well, that's not the case anymore, at least when it comes to children. The new term for these types of Arthritis is......drum roll please.....

'Juvenile Idiopathic Arthritis'

Why the change? To be honest, I don't totally know. Dr. I said that children don't usually get a 'true' rheumatoid arthritis (every now and then they do) which means they don't really know what causes it (hence the term 'idiopathic'). Although I have to say that after reading the definitions on the arthritis website for Rheumatoid Arthritis and JIA, I can't really tell the difference. Take a looky loo and see for yourself. Maybe there's something I'm missing. Anyway, so it's no longer JRA although the medical community still seems to be having a hard time making the switch. Case in point, when we went for Siobhan's eye check up with Dr. P, the nurse and then doctor both referred to it as JRA. And according to Dr. I, the department head at Primary Children's Hospital still has trouble calling it JIA. Too funny! Usually when I'm talking to people about it, I just say JA. It's easier and saves a lot of time, confusions, breath and explanation.

So there you have it....your fun fact about arthritis....now go tell your friends!

My Brain Hurts...

I love going to the doctor. I say that in jest, but a lot of times it's not so bad and I end up getting answers to very valuable questions. Like today when we went to see Dr. I and I asked her what the steroids were actually doing when Siobhan was taking them (she's been off of them since the 9th). By the way, how's that for awesome mothering? I agreed to put my daughter on a big medication without knowing what it was actually for. Fail! Anyway, it turns out the roids are used as a high powered anti-inflammatory. Since the inflammation is through her whole body, you need something intense to quell it and get the inflammation to a baseline and then control it from there with other medications. Make sense?

Well, we found out today that the prednisone didn't do all it was supposed to do. In general, Dr. I was pleased to hear that up until we went to Portland, there had been improvement. But she was disappointed to hear that her ankle got so aggravated while out of town and that it hasn't improved much since we've been home. She was also displeased with the lack of improvement in her left knee-the one that started it all. So we're getting more aggressive...more steroids!

You may remember that we was taking oral prednisone along with her twice daily anti-inflammatory and then getting an injection once a week all the while getting a bunch of supplements. But the oral prednisone didn't do the trick. So we're going to take Siobhan in sometime in the next two weeks (TBD) to have injections of a steroid straight into two of her joints-her left knee and the right ankle. Huge bummer. We talked about it at our first visit and didn't want to have to go that route, but it seems like the only option at this point. We have to get her body to a point where things are under control and we can prevent any further joint deterioration. So while the steroids won't make it go away, it will really calm things down.

But then there's more questions....(1) How is it done? (2) What is the difference between this and her weekly injections? (3) What are the side effects? (4) How often will she need them? Here are the answers as best as I know them. (1) We'll take her to Primary Children's Hospital and they will put her under general anesthetic. Dr. I will then inject her right ankle and left knee. The bummer part of it is the anesthetic part. Yuck! Hoping for easy transitions on that front. But they'll so all her blood work at that time, which makes her next blood draw much easier on everyone involved! (2) Aside from the obvious that it's a different medication, this one will go directly into the anatomy of the joint. Her methotrexate shots only go into the top layer of fat in her arm. (3) The side effect of this steroid are considerably less than the prednisone and usually don't last longer than the first 24 hours. There's always the added risk of 'infection at the injection site ' (I feel like I'm giving a drug commercial) and there is the possibility of skin thinning, but both are rare and easy to deal with. (4) At this point, there's no way to know how often she's going to need the joint injections. It's a case by case situation. Some kids get one and never need one again, others have to get them every six months. We'll know more at her follow up appointment about 4 weeks after the shots.

Some upsides from the appointment....Dr. I gave us the go-ahead for Siobhan to participate in any activity she chooses. She kind of told us that the first time around, but she was very emphatic about it. Also swimming. Also, we are switching her twice daily anti-inflammatory liquid suspension medicine to a once daily pill of a stronger medication. It should help a lot more and we only have to give her medication once a day now. Yay! In addition, Siobhan is eligible for two research studies which is cool!

I Knew It Would Happen...

We just got back from Portland and the big family reunion. We had a great time and the kids were able to enjoy lots of quality time with their cousins. It's been a awhile since they've seen the cousins and nobody had really met Ethan in person. But with all the playtime of course came a lot of running and skipping and jumping. Of course that is awesome for all kids, but when the kid has arthritis, it can pose from trouble.

Siobhan literally seemed to be running, jumping climbing trees all day every day! By Tuesday, she was sore. I was expecting her knee to bother her, but it was her right ankle that was giving her trouble all week. Not only was she limping, she would barely put any weight on her foot at all at some points. But she kept going (and going and going and going and going) and did her best to keep up. She actually did a pretty good job of it.

It just makes me sad that we have to watch out for it all the time. When we were at the beach, I found myself thinking, 'Is the water so cold that it's going to make her ankle stiffen' or 'When she's running/limping around, is she going to come down wrong and hurt herself more'. It's to constantly be thinking about it all the time but then not wanting to let her know that you're worried.

While we were preparing for the trip, I was so worried that something was going to flare up. Turns out, I was right. It happened. But it's all good, cause now we have the under our belts. We've done the traveling thing with arthritis. We got through it and we have some tools in our arsenal for the next time. The unpredictability of it all is the hard part. Not knowing what is going to set her (it) off keeps you on your toes.

Siobhan at the Beach-July 2011

Shots and Ear Piercing...

Siobhan has been getting her methotrexate shot for almost 6 weeks now. As her reward, we told her that she can get her ears pierced. We've never been opposed to her getting her ears pierced, we just never thought it was the right time. But we thought that if she can handle getting a shot on a regular basis, she can handle getting her ears pierced.

Well, this Friday will be number 6 which means it's time! I think we're going to do it when we're in Portland next week and see if some of the cousins want to come. Here's the problem. I'm nervous about where to go to have it done. I was going to go to claires, but then I read some things online where people had some horror stories. I've been told by a lot of people not to go to the piercing pagoda so I think I've ruled that one out. And believe it or not, I've even thought of taking her to a tattoo/piercing parlor because I've heard that they are super clean. And did you know that some pediatricians do it too?

So here's my question, what is the general consensus of where to get it done? Should I just stick with Claire's or does anyone have any other recommendations?